Nordic Myeloma Study Group

Pro and QoL Group

Patient-reported outcomes and Quality of life Working Group

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Background

For more than 25 years, it has been a tradition in the NMSG to add quality of life (QOL) endpoints to clinical trial protocols. In addition, methodological research of QOL measurement e.g. minimal important difference and response shift has also been conducted within the NMSG. QOL can be valid captured by patient-reported outcomes (PRO).  

Treatment decision making in patients with multiple myeloma (MM) is based on the balance between expected treatment efficiency and adverse events combined with patient preferences. For the past 15 years, several treatment options for the MM disease have emerged such as immunomodulation drugs (thalidomide, lenalidomide and pomalidomide), proteasome inhibitors (bortezomib, carfilzomib, and ixazomib) and monoclonal antibodies (elotuzumab and daratumumab). Symptomatic adverse events are included in the concept of QoL and are underreported by clinicians, whereas PROs have been found more precise and informative. Prognostic forecast of QOL can be used to build into patient decision aids supporting treatment decision making in a clinical setting.  

Aim

The aim of the NMSG patient-reported outcomes and quality of life (PRO/QOL) Working group is to investigate QOL aspects of patients with multiple myeloma. 

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Methods

The NMSG PRO/QOL data group use a multidisciplinary research approach with inclusion of NMSG members with research interest in PRO/QOL in patients with MM. The group facilitate research projects from protocol writing, study conduct, data collection and analyse as well as reporting. The group use literature, registry, qualitative and quantitative research methods. Addition of PRO/QOL endpoint to upcoming NSMG clinical trials will be the in the centre of the PRO/QOL working groups activities. 

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Perspectives

The benefits of integrating knowledge of QOL into treatment decision making in patient-centered care have been documented. Therefore, inclusion of QOL in treatment decision making in MM is an increasingly desirable clinical approach by patients and health care policy makers. Before that can be done, more  research of is needed.